Flensburg Files Holiday Moments: A Boy With PANDAS

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During the holiday season, The Flensburg Files has been posting some memorable holiday moments on its facebook page, as a way of showing holiday spirit, as well as the true meaning of Christmas, which is showing how much we love and care about the other person(s)- family, friend or neighbor alike. This article in the series hits home for the author, as a close friend and former classmate, who also sang together in a barbershop quartet in high school, and his family are facing a rare enemy that is affecting one of their own. This is their story…..

When one thinks of a panda, we look at the furry black and white bear, who live in Asia and feast on bamboos, shoots and leaves. In fact, Lynne Truss started her book on the use of commas and punctuations with this anecdote:

A panda walks into a café. He orders a sandwich, eats it, then draws a gun and proceeds to fire it at the other patrons.

“Why?” asks the confused, surviving waiter amidst the carnage, as the panda makes towards the exit. The panda produces a badly punctuated wildlife manual and tosses it over his shoulder.

“Well, I’m a panda,” he says. “Look it up.”

The waiter turns to the relevant entry in the manual and, sure enough, finds an explanation. “Panda. Large black-and-white bear-like mammal, native to China. Eats, shoots and leaves.

Jamison Nestegard is nine years old and the youngest of three children belonging to the parents, Sid and Rebecca.

Jamison has P.A.N.D.A.S, but not the furry bears that you can keep as pets- especially in a town, like Jackson, Minnesota, which has its really cold and snowy winters. P.A.N.D.A.S love warm and humid regions.  The P.A.N.D.A.S we’re talking about here is a serious disorder that starts with a physical illness in a form of strep bacteria and later affects the nervous system.

The full meaning of P.A.N.D.A.S is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci. It was discovered by  Dr. Susan Swedo, Dr. Henrietta Leonard, and Dr. Judith Rapoport in the 1990s and is characterized by the body’s own antibodies to streptococci which attack the basal ganglion cells of the brain. In short, the body’s own autoimmune system cannot respond to strep bacteria resulting in its build-up in the brain, causing several psychological abnormalities, such as obessive compulsive disorder (short, OCD), tics, anxiety, enuresis or urinary frequency, sleep disorders, behavioral regression, aggressiveness, hyperactivity, hallucinations, eating disorders, wide pupils, increased sensory responses, deterioration of fine motor skills, short term memory loss, and gastro-intestinal complaints.  Patients with P.A.N.D.A.S have at least 75% of these symptoms, yet research revealed that most patients with P.A.N.D.A.S have all of the above-mentioned symptoms.  Symptoms usually begin between the ages of 5-7, but can begin as early as 3 years of age, yet as the bacteria builds in the brain, the symptoms progress over time. According to the P.A.N.D.A.S Network, the disorder affects one in every 200 children in the US alone.

According to Rebecca in an interview with the Files, Jamison’s symptoms started at the age of six and started from there. “Jamison’s case started with tics and progressed from there.” She added “His symptoms dramatically increased over the next few months.  His latest list of symptoms include tics, OCD, anxiety, sleep disorders, wide pupils, increased sensory responses, deterioration of fine motor skills, short term memory loss, aggressiveness, gastro-intestinal complaints, and behavioral regressions (severe separation anxiety, baby talk, etc.).”  After visits to countless physicians and specialists in the last two years, Jamison was diagnosed with P.A.N.D.A.S last month. Yet the discovery of the disorder came by chance. The reason: “We saw behavioral therapists, counselors, pediatricians, neurologists, psychiatrists, and occupational therapists. He was seen in offices, E.R.s, extensive outpatient programs, and even hospitalized. No one had an answer or offered a direction to go in.”  The discovery of P.A.N.D.A.S came through an employee working for the county human services via colleague who had received an e-mail about this debilitating disorder. After reading the information, it was revealed that Jamison had all but one of the symptoms of P.A.N.D.A.S. Research later led to a specialist in Chicago, who, after a visit, confirmed the diagnosis after undergoing tests for the disorder. Miroslav Kovacevic, MD FAAP is the practitioner who has been working with the disorder for almost half of the 40+ year career and has received numerous accolades for his research and discoveries. His research has identified the symptoms and possible causes of P.A.N.D.A.S, as well as possible treatments.

Currently, Jamison is undergoing treatment for P.A.N.D.A.S with his mother at his side in Chicago, while her husband Sid and the rest of the family are working on a fundraiser and have already set up a fund to collect money for the treatment. According to Rebecca, for one treatment alone, it costs $13,000! P.A.N.D.A.S is a relatively new disorder but one full of controversy as many specialists in the fields of medicine refuse to recognize the disorder. Health care providers in Minnesota and the region have never heard of P.A.N.D.A.S. Even insurance companies will not cover the costs of any of the treatment. This includes that of the Nestegard family.

Fortunately, the family is not alone. As tightly knit as the community of Jackson is, let alone the southern half of Minnesota where the author was born and raised, friends and family members as well as those who have a direct connection with P.A.N.D.A.S have come together to understand the disorder, address it to the public and give Sid and Rebecca some much-needed support so that they can help Jamison overcome the disorder. With the identification of the disorder already confirmed, the goal is for the public to understand the gravity of P.A.N.D.A.S and encourage parents, whose child has symptoms similar to Jamison’s, to come forward and share their stories and provide them with whatever treatment is available, no matter where or how.

Already in place are a few groups that advocate for the diagnosis and treatment of P.A.N.D.A.S. They include the P.A.N.D.A.S. Parent Support group, P.A.N.D.A.S. Network, and  Parents/Caregivers of Children With P.A.N.D.A.S. All of these groups are from the Chicago area.  A Midwest P.A.N.D.A.S. Conference was launched in 2015 at the Washington University in St. Louis, where parents, caregivers and physicians convene to share ideas and information on the symptoms and causes of this rare disorder. Other P.A.N.D.A.S groups exist in the US but only rarely, according to information in the interview. In Europe, there exists no such organization to date, nor has it been confirmed as a disorder or even disease by the World Health Organization.  Because of its rarity, the plan is to bring Jamison’s experience to the forefront to provide awareness and options available. “The more attention we draw to the disorder the more likely we are to pass through legislation providing insurance coverage for patients and support for their families,” Rebecca stated in the interview.  Already launched is a blog bearing the same name, she has been keeping a diary with information and hardships dealing with Jamison and his fight with P.A.N.D.A.S. A link to the blog can be found here. Letter campaigns to schools, pediatricians and legislature will follow. Blood drives are being considered as “….the treatment uses IV immunoglobulin (IV), which is made from plasma through blood donations,” Rebecca states. With Jamison as an ambassador, it is hoped that with each drive and speech, the attention pertaining to P.A.N.D.A.S will come to the forefront also through the media outlets, including TVshows and documentaries and even social media.

As for Jamison’s cause, a fund-raiser is being established for him, which is scheduled to take place on:

18th December, 2016 at Riverside Elementary in Jackson, Minnesota from 9:30-12:30 (map enclosed here)

In addition, a fund has been set up where you can donate money and resources to help with the expenses with P.A.N.D.A.S. You can donate your money to Bank Midwest. The address: 509 3rd St, P.O. Box 49, Jackson Minnesota, 56143 Please make your checks payable to The Jamison Nestegard Benefit Fund.

A GoFund Me account has also been set up to help pay for the expenses involved with the treatment and other costs associated with it. To donate, you can click here.

Family is the core of one’s life, the source where the individual grows up with love. When threatened by such a debilitating disorder, like P.A.N.D.A.S, the family finds the causes and treatment, so that the individual can have a fulfilling life, no matter what the cost or the distance. When there is a will to live, there is a way to have a fulfilling life. With Jamison living a life as he is living- with close family and friends, Sid and Rebecca, as well as the rest of the family and friends are doing all what they can to ensure that he can live to tell others of his experiences. And this is an example of how we should devote our time for our loved ones, especially for the holidays.

An excerpt of the diary of Jamison’s experience with P.A.N.D.A.S can be found in the wordpress version of the Files, which you can access here and subscribe to follow. It is also hoped that when read on the opposite side of the Atlantic that many Europeans and people in other regions are willing to step forward to help.

 

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